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CLL---how does it behave?

Posted by annedallas @annedallas, 4 days ago

Seventy-eight year old female here. Diagnosed with bladder cancer in early 2025 and had my bladder removed that March. A CT scan during my workup revealed a hot spot in my right armpit; a biopsy revealed CLL. Very early stage. So far I've had two ivig infusions and lab work, nothing more. The lymph glands in my neck occasionally feel swollen, and I have sporadic pain in my right shoulder/back which I'm hoping is muscular or arthritis (I've seen my shoulder surgeon, and have been doing PT). I seem to still have my robust immune system.
How does CLL manifest, other than in blood counts? Are there predictable body changes or other forms of distress? How does one know when it's genuinely progressing? I can be a hypochondriac and have a fertile imagination. It would be nice to corral the pessimism!

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minnesotajim | @minnesotajim | 4 days ago

It’s different for everyone. I’m 78 and was diagnosed with CLL 20 years ago. If you’re not seeing a CLL expert hematologist, find one (society.org has lots of information and lists of experts).

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ksalvia | @ksalvia | 3 days ago

AS minnesotajim says, it’s different for everyone. My 73 year old husband got diagnosed in March which called for immediate treatment (as immediate as the “system” would permit, anyway). He had no symptoms and it was routine bloodwork following a bout with pneumonia in July 2025 that revealed the red flags. Turned out the pneumonia itself (and subsequent illness) were symptoms. Definitely seek a hematologist. Agree cllsociety.org is a great resource.

Current symptoms: tires easily, weight loss, bronchitis that won’t go away.

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annedallas | @annedallas | 2 days ago

Me, again. And thanks to both of you for your responses. I do have a highly qualified oncologist/hematologist at the large teaching hospital here, whose staff I see every four to six months or so; they're the ones monitoring my need for Ivig infusions. She has said that since my disease was discovered at a very early stage, it does not warrant treatment and that things might stay this way for quite a long time. I've been told what to watch for (night sweats, pronounced fatigue, etc). But I'm still curious about what others have experienced, particularly those who've gone for years without actively treating the disease. Does it flare up? Is there pain? Is my current, mild head cold a harbinger of things to come? The answer may well be "It depends!" But I'm trying to get a handle on how worried I should be. How big a deal is this?

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minnesotajim | @minnesotajim | 2 days ago
In reply to @annedallas "Me, again. And thanks to both of you for your responses. I do have a highly..." + (show)
Profile picture for annedallas @annedallas

Me, again. And thanks to both of you for your responses. I do have a highly qualified oncologist/hematologist at the large teaching hospital here, whose staff I see every four to six months or so; they're the ones monitoring my need for Ivig infusions. She has said that since my disease was discovered at a very early stage, it does not warrant treatment and that things might stay this way for quite a long time. I've been told what to watch for (night sweats, pronounced fatigue, etc). But I'm still curious about what others have experienced, particularly those who've gone for years without actively treating the disease. Does it flare up? Is there pain? Is my current, mild head cold a harbinger of things to come? The answer may well be "It depends!" But I'm trying to get a handle on how worried I should be. How big a deal is this?

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@annedallas Everyone with CLL has a compromised immune system, so infections (like colds, sinus infections, etc.) are common. If the IG(g) level falls a lot and you’re getting infections, you might be helped by IVIG infusions)I get them quarterly). As noted earlier, everyone is different. If symptoms appear, you’ll know it—and consult your medical team. Just live your life and try not to worry too much about it. I’m 20 years in, travel internationally extensively (typing this in China), and have been taking ZANUBRUTINIB for nine years. It doesn’t have to change your life!

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mcconachie | @mcconachie | 22 hours ago
In reply to @minnesotajim "@annedallas Everyone with CLL has a compromised immune system, so infections (like colds, sinus infections, etc.)..." + (show)
Profile picture for minnesotajim @minnesotajim

@annedallas Everyone with CLL has a compromised immune system, so infections (like colds, sinus infections, etc.) are common. If the IG(g) level falls a lot and you’re getting infections, you might be helped by IVIG infusions)I get them quarterly). As noted earlier, everyone is different. If symptoms appear, you’ll know it—and consult your medical team. Just live your life and try not to worry too much about it. I’m 20 years in, travel internationally extensively (typing this in China), and have been taking ZANUBRUTINIB for nine years. It doesn’t have to change your life!

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@minnesotajim sorry but what is an IVIG infusion?

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